I wonder if there will come a day where I will enter the hospital doors with our Heidi without an ounce of trepidation. As the hours tick by, the nervousness intensifies. We live with the daily shadow of Kawasakis, and yet in the day to day, the memories of those awful hospital days, the recognition of what happened... Of what could have happened... Of the continued danger, is drowned out by the noise of daily life. And then these appointments approach, and suddenly, I'm right back in May 2013 and it all feels big again.
We are so thankful to God for his faithfulness to us and for his protection over our little girl these past four years. While chicken pox has raged around us, I see it as no accident that somehow our little lady has managed to avoid it.
Heidi has thrived under the daily reality of medication. At first, the meds were an enemy, providing their own menacing a cocktail of risks and side affects... But they were necessary, and with each passing uneventful day, my heart has relaxed a little, and slowly, but surely, the meds have become our friend. Our safety net.
Which is why today is big.
Because last year, we were told that by this year, they expect Heidi to be able to come off her medication. This is wonderful news in so many ways... The news we have so long waited for. No longer would we have to run away from flu and chicken pox... Our little girl would no longer bruise or bleed more dramatically than those around her, she would get tired less easily. So many positives. But the prospect of coming off the medication is also terrifying. The medication has kept our little girls blood thin, protecting her from the risk of clots forming in her misshapen arteries and it has comforted my mama heart to know that something was protecting our little girls body from risk.
Except in my worries and my fears, I realise I've forgotten that that isn't the whole truth. It is not, ultimately, a little white dissolvable tablet that has kept our Heidi safe, but our Heavenly Father who asks us to bring him all our prayers and petitions, and promises us his peace. He has been so faithful to us these past four years... And has answered so many prayers, and yet still, I am slow to trust.
Our little lady can be in no safer place than in our heavenly Fathers hands...
Please do pray for us today...
> That Heidi will enjoy the adventure and not feel overwhelmed
> That we will trust our Heavenly Father to protect our little girl
> That the Doctors will have wisdom to know whether Heidi is ready to come off her meds
> That we will have peace - not fear if she comes off, or disappointment if she stays on
> That Heidi's heart would belong to the Lord Jesus, and she too would entrust herself to him.
We long for healing for our little girl... And we would ask you to pray for that too, entrusting that God, in his wisdom, has a perfect and good plan, whatever the outcome.
Thank you friends... We will keep you posted.